Sunday, March 28, 2010

Yellow Ribbon Smiles

Saturday Amber had green beans for the first time and LOVED it!
It's going so much better than the squash did.

My mom invited Amber and I to join her at a Yellow Ribbon Event up in Manchester Vermont. Its an even for families of deployed solders. A time where they can all get together share what they've been going through and get some education on things they need. The people that put it on really took good care of the families. They had massages, fun stuff for the kids and if you had to travel over 50 miles they put you up at the hotel. It was held at the Equinox Hotel, it's quite the swanky place!
Let me give you a little tour of our room :)

I loved the color scheme! And the free baby :)

The full length classic photo was so cool. They were all over the hotel

This was my favorite part. I love when the sink station is outside of the bathroom.

The bathroom was tiny but cute! The ceiling was the old printed tin but in the shower it was really low. I was worried I'd hit my head and I'm only 5' 2"! The cool part was a little square nook in the shower for the soaps. Sorry the pictures so fuzzy some day I'll go back to using a real camera and not my phone :)

We had a really good time and Amber was really well behaved she had lots of smiles for anyone in uniform!! Waiting to see my hubby I haven't seen him since Saturday and I wont see him till the wee hours of Monday morning! It's the longest we've been apart! Although after sitting in on the spouses meeting I feel bad :( They are very strong women, I could not be apart from my hubby for that long!!

Tomorrow I'll be getting up early to pack for our trip to PA!!!
Congrats Dad on meeting some very important people!!!!!!
I told Amber, she has a case of the giggles tonight but I think she was impressed!

Friday, March 26, 2010

Squash Not

After Tuesday nights great squash success I was super excited to try it again. Unfortunately we had anything but success. On the first bite of squash she made an awful face. After three she threw up hardcore. I laid her down on the changing table she was smiling and I thought everything was fine. As I was buttoning her up I looked at her face again, she was trying to throw up but couldn't so she was making a horrible silent gaggy/choking face. She finally made some noise,breathed, inhaled some puke and shot some out her nose. Ugh it was horrible and scary.
I'm not sure what caused her to have such a bad reaction. It seems like she doesn't like reheated food, she did a little better the next morning with fresh squash. We know her pulse oxygen levels go down when she eats and she has a hard time breathing when she's in a seated position so maybe that had something to do with it. So far she's doing better overall not choking on the rice and we're praying it stays that way.

We tried pigtails again yesterday! They came out a lot better than our first attempt
(we did not take pictures of the first ones they looked so bad!)

She wasn't too sure at first

But she warmed up to them!
She even pulled her binky out to give me that smile! I love the pigtails but they make her look so old! Her sleeping is somewhat better she went to bed around 8ish and then was up at 12, 3:30 and started her day at 6:30. Its not great but its a lot better than it has been!

I'm going to be really busy the next couple of days. Saturday night to sometime on Sunday I'll be going to Vermont, Monday to Wednesday I'll be in PA and then Thursday we have appointments! Depending on how things go I probably won't post again until next Thursday or Friday.

Wednesday, March 24, 2010


I just love that word! Yes I am a little off my rocker these days thanks to my lack of sleep but I do have a reason for the squash.
Last night Amber had squash for the first time and...she LOVED it! More than rice or oatmeal! It was so stinking cute although she was covered in it.
I think part of her sleeping problem is she has impetigo again around her mouth. It's really bad this time so on top of her antibiotic she has an anti-fungal. She's apparently having an allergic reaction to it so she is a rather grumpy gertie lately :(

She loves to hang out on daddy's lap :)
This was after her dinner. The good news is her dinner filled her up and she went to bed on time at 7. She did wake up a little after 10pm and then was up from 2am to 5am. Ugh, not fun. We did sleep in till 8 but then it was a mad rush to get ready before the early intervention lady came at 9:30.

She is also a little book worm!
She loves to be read to (as long as it rhymes) and loves to look at the pictures. This is her favorite book called "Hippos Go Berserk!", from her grampy before he deployed.
More from my update yesterday; She will be seeing the Children's geneticist again in May and the 1st of April we have another joint appointment with our orthopedist and #1 geneticist. Our interventionist wants us to talk to them about getting her a trunk support brace thing, this may or may not be an option with her chest sensitivity/shape. Our interventionist is also talking with her equipment person about a bigger car bed or some type of car seat that would work better for Amber!
This is Random but..
Yesterday the hubs and I took a trip to our local feed and grain store to pick up some bird seed for my mom. Its one of my favorite places to go. They have some really interesting things there. Every type of bird feeder and some really weird bird feeding gadgets. Some very interesting paraphernalia if you have an over grown rodent pet, like mesh vests to walk them in....I was thinking about getting one for Mr Pickles but I don't think they have XL cat sizes :( What really caught my eye was a big yellow sign at the checkout register. The first part was something about it being that time of year or spring time. The last part was what caught my attention, in big bold letters it said "Reserve Your Chick Now!" In case you didn't know I used to have a pet chicken.

"her" name was Lucy. She turned out to be a he....a very big, loud he and sadly had to be adopted by a very loving vet. I really love chickens as silly as it seems. However, my squatter status, four cats, a baby and a husband that thinks they're dirty keeps me from having anymore. It's really quite sad but seeing how I can't get help making a cat enclosure I don't see how I'd find help making a chicken coop. Ah but I can't help reminiscing about my senior developmental biology class and they're cute fluffiness!

In case you can't tell I really need some sleep!
I'm off to take a much coveted nap now that miss stinkypants has decided to take one too!
Happy Spring To You All!
Don't Forget To Reserve Your Chicks!

Monday, March 22, 2010

A quick update

Yes she is getting tubby!
Sorry to keep you all in the dark but Amber has not been sleeping lately and I haven't had the brain power to share any updates!
Our surgery consult went really well. The surgeon sees more diaphragmatic hernias in a day than most people see in a year, so he really knows his stuff. He told us there are two types and she has the less severe type. Amber's is coming up right under her breast bone (sternum) and going over the heart. It sounds horrible but he said the heart unlike the lungs is a strong organ that doesn't mind having the bowels in front of it. The best news from the visit is that Amber (at least for now) will not have to have surgery. He would like to wait and find out what is going on with her genetically because he is not convinced that fixing her hernia will fix her weight/growth problem. I'm completely fine with this, I'd rather her not have the surgery if she doesn't really need it. When we were in the waiting room there was a 7 month old boy the same size as Amber (he was a little shorter than her) but it was so nice to see another baby like her!
We also saw another geneticist Friday, at Children's. Yes she makes number 3! She and a specialist looked at Amber. They were really convinced she had a syndrome similar to Beals and Marfan but she is still not a fit for this one either. They were just as confused with her as everyone else has been. They took a whole bunch of blood to test for some more things but we won't hear any results for at least 6 weeks. We'll be seeing them again but we're not sure when. We still haven't heard any results from her skeletal scan, we probably won't until the 1st of April. It could either give us a positive or rule out Juene Syndrome and possibly some other things.
Today was Amber's 6 month appointment. It went pretty well she is 8lbs 10oz and 23 inches!! She is getting soo big! She officially does not fit her car bed anymore, this is great but she has a hard time breathing in her upright car seat. The Dr is trying to get us in to have her take the car seat challenge again. It's really uncharted territory, usually when a preemie who needs a car bed reaches the time they would have been born they are transitioned into an upright car seat and they do not need to take another car seat challenge. It will be really weird to have her in with newborns. Our other exciting news is we're supposed to start her on veggies! I'm not sure how I feel about it. If it helps her sleeping that would be great but if its going to make her choking worse I'm not excited about it.
I'm really sorry if this doesn't make sense Amber has been hardly sleeping. She will do 1 1/2 hour to 2 hour stretches at the most but she's getting up at 1am and not going back to sleep till 6 or later and not napping. The two of us were able to nap for almost 4 hours today but she got three vaccines so she probably won't sleep through the night. The poor thing you can't even brush her leg without her screaming.
We'll I'm off to bed praying Amber sleeps tonight, our warm weather comes back and we can get back to walking!

Thursday, March 18, 2010

Hello Sunshine

I'm just loving this sunshine we've been having!! We got a 4 mile walk in today, that's a total of 12 miles this week!! I don't think we'll get a walk in tomorrow but hopefully we'll get one on Saturday. I think I've lost my mind with all this sunshine I can't believe how fast this week is flying by and Amber is 6 months today! Can you believe it I feel like we just brought her home yesterday. I haven't done her 6 month pictures yet but here are some from today.

She's so cute laying on her back playing with her hands.
She always seems surprised to see us She is all smiles :)
I love this onesie my aunt made for her, it has cute flowers on her bottom (mom I did not say butt for you:) ) but I couldn't get a picture because she was being grumpy (yes don't let her smiles fool you!)

Today was not all sunshine. Our geneticist called to tell us she made us an appointment with a geneticist at Children's. I guess this geneticist (#3) specializes or has seen what ever it is that they're thinking it is now. Sorry to be so ambiguous about it. I guess it has a difficult name she was going to e-mail it to us so we could look into it but she didn't, she's not a big fan of her e-mail. So we're going to be at the hospital for a very long time tomorrow. Our surgery consult is at 2 and the genetics appointment is at 4, poor baby is going to be so done by the end of the day.

Our car (yes the tiny orange scion) bit the dust. I'm not sure whats up with it except that the hubs called to say he was waiting for it to be towed. I think it will be fixable but it makes things difficult. Even though this really stinks I can see God's hand in it. He wasn't supposed to work tonight and if he hadn't it would have died on our way to or from Boston....and that would have been horrible! Our other car has crapped out on us too but thankfully we can use my moms car.

At this point its kind of funny it seems to be one thing after another. I'm just enjoying this sunshine and hoping it stays for a long time!!

Oh, I would also like to say that I am far from a blogging pro and I am still trying to figure all of this out. I've found that if I use google chrome I have a lot of issues getting my pictures up right. I still can't figure out my video issues I tired again tonight on Internet explorer and it still didn't work. I guess I'll have to get some help from the hubs on this one.

This is an oldie but a goodie :)

Wednesday, March 17, 2010

Happy St. Patrick's Day!

Happy St. Patrick's Day!!

It's a picture perfect St. Patrick's Day the sun is shinning, the snow is melting the grass is.....brown :) well at least the sun is shinning! I have not prepared anything special for today, no green cookies, food or even corned beef and cabbage :( it's very sad. I did put on a green shirt and give Amber a green bow, we're the only two Irish ones in the house so we have to show some support for the day! I will share with you three Irish blessing/poems from my tiny "Irish Blessings" book above.

The first is in honor of St. Patrick's Day:

May the leprechauns
be near you,
To spread luck
along your way.
And may all the
Irish angels
Smile on you
St. Patrick’s Day.

The second one is to make you laugh:

Health and a long life to you.
Land without rent to you.
A child every year to you.
And if you can’t go to heaven,
May you at least die in Ireland.

And the third is one I love:
When Irish eyes are smiling,
Sure it’s like a morning spring.
In the lilt of Irish laughter
You can hear the angles sing.
When Irish hearts are happy,
All the world seems bright and gay.
And when Irish eyes are smiling,
They’ll steal your heart away!
~ Traditional Irish Folk Song

Here are my favorite smiling Irish eyes! (I really hope this video works I've been having issues getting videos lately)

Yesterday we enjoyed a lovely 5 mile walk! Amber really loves being out in the fresh air so I think we're going to head out on another walk! Hope you're all enjoying some sunshine!!

Tuesday, March 16, 2010

Cabin Fever

I don't know if maybe we've all had too much sugar or we have cabin fever from all this rain! (By the way I can't say cabin fever without thinking of the movie Muppet Treasure Island) Anyways whatever it is made us have a very silly day yesterday.

I've mentioned before that Amber's found her voice. She talked non stop yesterday in her new high pitched voice, its so cute! The other thing she's discovered is her nose. Well, she's discovered how to put her finger up her nose. She still has a hard time sucking her thumb because of its position so her pointer finger ends up her nose. I guess she thinks it fun because now she just chills with her finger up her nose even when she's not sucking her thumb. When you catch her doing it she just laughs and smiles.

It makes photo shoots harder. So lady like right!

I do have somewhat of an update on Amber. I made a lot of calls yesterday! Her 1st geneticist is taking care of sending her records over to Children's (yaay)! She was also upset that we have to wait till Friday for a surgery consult and is trying to get us there sooner. We also discussed our predicament about having two important appointments on Friday. Later in the evening I got a call from the new geneticist we were supposed to be seeing on Friday. It was so nice to talk her she sounded like she could have been Amber's grandma. She said she constantly thinks and talks about Amber. She even has a picture of Amber as her background and has a slid show of her going all the time! I was completely shocked by how much she cares about our little Amber!! She really wants us to just focus on having the diaphragmatic hernia fixed right now and said that she would just have our first geneticist run the tests she was going to do. That really takes a lot of stress off of us, so now we're just waiting to hear if they are going to move the consult up or not.

I think that's all for now I have a ton of cleaning to do, it finally stopped raining and the hubs has the day off!
I'm thinking today is going to be another good day :)

Sunday, March 14, 2010

Just What The Dr. Ordered

My best friend came over Saturday and it was just what the Dr ordered after such a crazy week. We decided to make cookies and after 10 mins we were back to being the same old crazy girls we were in elementary school!
To give you an idea here is a favorite picture of us from the night of my wedding rehearsal.

I have the perfect book for making cookies

It's a behemoth to say the least; 320 pages, 150 recipes and I think it weights more than Amber!

After a lot of giggling we decided on making Finnish Spice Cookies.
2 cups all-purpose flour
1 1/2 teaspoons ground ginger
1 1/2 teaspoons ground cinnamon
1/2 teaspoon ground cardamom
1/2 teaspoon ground cloves
2/3 cup packed light brown sugar
1/2 cup (1 stick) butter, softened
1/2 teaspoon baking soda
3 to 5 tablespoons how water
Royal Icing (recipe follow)

1) Place flour, ginger, cinnamon, cardamom and cloves in medium bowl; stir to combine.
2) Beat butter then brown sugar in a large bowl until light and fluffy. Dissolve baking soda in 3 tablespoons water. Beat into butter mixture. Gradually add flour mixture. Beat until dough firms. (If dough is too crumbly, add more water, 1 tablespoon at a time, until dough holds together.) Form dough into 2 discs; wrap in plastic wrap and refrigerate until firm, 30 minutes or overnight. (we did a little over 30 min for one and it was perfect left the other in longer it was really hard and I didn't like working with it as much as the first.)
3) Preheat oven to 375 F Grease cookie sheets; set aside
4) Working with one disc at a time, roll out dough on lightly floured surface to 1/8-inch thickness. Cut dough with floured 3-inch pig shaped cookie cutter or desired cookie cutter. Place cutout 1 inch apart on prepared cookie sheets. Gently press dough trimmings back together; reroll and cut out more cookies.
5) Bake 8 to 10 minutes or until firm and lightly browned. Remove cookies to wire racks; cool completely
6) Prepare Royal Icing. Spoon into pastry bag fitted with writing tip. (or any plastic ziplock/sandwich bag and cut a tiny bit of the tip off the bigger the hole the more comes out) Decorate cooled cookies with icing. Let stand at room temperature 1 hour or until set. Store tightly covered at room temperature or freeze up to 3 months. Makes about 5 dozen cookies
Royal Icing: Beat 1 room-temperature egg white with electric mixer at high speed until foamy. Gradually add 2 cups sifted powdered sugar and 1/2 teaspoon almond extract; beat at low speed until moistened. Increase mixer to high and beat until icing is stiff. (Beat in up to 1/2 cup additional powdered sugar if necessary to reach proper consistency)
My Notes: Its a very easy recipe but like the name says they are very spicy the frosting is a a good contrasting flavor. I like them; they are like a ginger snap's exotic cousin. Royal Icing can be a pain, really beat your egg! The trick is to make the icing when you're ready to use it. If it gets to stiff or its not sticking to the cookie you can microwave it for 20 sec that seems to fix it for me (it also helps if you have warm hands). I baked mine for 9 min on baking stones.

Here are the ones that haven't been eaten :)

They actually came out pretty well for all of our goofing around and it was so much fun!
I think I might be making these next!!!
Hope you all had a great weekend! Amber is doing well she's been non stop talking except when we try to video her! We have some more calls to make on Monday about her Friday appointment. Hopefully we'll have a quiet week till then!

Friday, March 12, 2010

We Have A Date (kind of)

When you have a lot of Dr's its like the game telephone in the end the message is not what it sounded like when you started. After much to do and lots of explaining we finally have a surgery consult date set up for little Amber. We've changed insurances (ugh) and we're going to Children's (at the demand of our pedi.). Our date? Well its this Friday the 19th. Sounds familiar right? Its the same day as our long awaited appointment with a different geneticist who thinks she might have cracked the code. We're not sure when we'll get rescheduled, they pulled some strings last time I guess we'll just have to wait and see.
The good news is after talking to our main geneticist it sounds like her hernia is not that bad and this will be a one time permanent fix. Other than causing her difficulty to breath the hernia has not impacted the growth of Amber's lungs! It's yet to be decided if the hernia is the main cause of Amber's chest shape and poor weight gain. It could be a magic fix or it could just puzzle them more. The Dr did say that its almost guaranteed that it will fix her breathing issues. Our anesthesia fears have not been put to rest yet, especially after being informed that they will be deflating her lungs for the procedure. We still have a lot of unanswered questions that won't be addressed until we have our meeting with another geneticist who specializes in diaphragmatic hernias, the surgeon and the anesthesiologist.
On x-ray news the skeletal survey went well. It was shorter than last time and they did not have to retake any of! Thanks to daddy who has mad skills :) The full reports on her chest x-ray and skeletal survey are not in but so far nothing else bad has been found. The only new oddity with her is the rib bones look wide and spread out......yeah they have no idea what this means or if its a bad thing.
Crazy stuff but we're hanging in there. Amber has been in the best mood the last couple of day its been so much fun! Can't wait for this weekend!

Wednesday, March 10, 2010

Unexpected Wednesday

Yesterday Amber was supposed to have her second skeletal survey (full body x-ray) and chest x-ray. Well somethings weren't set up right so we didn't have the skeletal survey done and its been rescheduled for Thursday.
I have to say so far the worst testing for Amber has been the chest x-rays. They use a thing called a Pigg-O-Stat. Since its really hard to explain what this looks like here's a picture of it.
It looks horrible but its not supposed to be painful just annoying. For Amber its painful because she doesn't have that kind of range of motion in her arms, she has tight shoulder joints and any pressure on her chest is painful for her. The poor thing didn't do so bad on her first one but the second one she screamed so loud I could hear her through the thick door. This is the only test I can't watch :( From this x-ray they should be able to tell if her chest has become worse or not and possibly whats causing it.

Ok so that was yesterday! This morning during Early Intervention our geneticist called Luke. This is another reason I hate the Pigg-O-Stat! Last time they called us the next day to tell us Amber has dangerously thin bones and something needs to be done right away. This time they called to tell us she has a Diaphragmatic Hernia and will need surgery this week or next. Ugh talk about earth shattering. I really don't have details about how bad hers is. They said right now its just her bowels and not any other organs that are in her chest. I guess she's had the hole in her diaphragm from birth but nothing had moved up till now (probably because she has better muscle tone now and is using her stomach more). I don't have details yet the Dr's will be calling us back today to give us a time. I do know that it will be done at Mass General by a Dr that specializes in this type of hernia. Its not so much the surgery that I'm worried about its the anesthesia. With her preexisting breathing, weight and heart problem it can make anesthesia difficult to say the least.
The good thing is this explains why she has been choking so much. I don't know why this causes choking but it means she probably won't have to have a swallow study done.
Please be praying for us its not an easy thing to hear or have to go through. I know God will see us through!

Right now she is sleeping (a rare thing!) She'll only take a nap if she has her pink elephant blankie buddy its so cute!

Friday, March 5, 2010

Did She Just Do That?

This has been quite an eventful week and I'll admit I'm exhausted!
The most exciting news is that Amber is now starting to wave, clap and laugh! She does it in her own way so its easy to miss but she's really doing them!! Of course like any other baby she won't always do it when you want her too so I have yet to capture it on video to share with you all!!
Bear with me here I have a ton of information and events to tell you about. I should start doing updates more than just once a week when I have crazy weeks like this!
Monday ~ My mom left to go visit my dad. We headed to an appointment for me. Amber decided to show off and waved at my Dr! What a nice relaxing day :)
Tuesday ~ We headed to Amber's genetic appointment. It went really well! We had some very nice discussions with the geneticist and found out some interesting things. The results of her general metabolic and general genetic test came back. They are both normal! Its good but it makes things more complicated for her Dr's. The geneticist is now toying with the idea that it might be Juene Syndrome It seems like it would be a good explanation of Amber's chest shape, slight breathing problems and issues gaining weight. However its not a perfect fit. She has very long fingers, contracted fingers, osteopenia and pretty normal length arms and legs. Anyways our geneticist is sending us to her friend as Mass General for a second opinion.
Wednesday ~ The early intervention lady and developmental nurse came to visit Amber. It was a great session!! Amber was in the mood for showing off; talking, waving, clapping, imitating the works! By the way at her age she shouldn't really be imitating so they were very impressed! When they visit they do a mini neuro exam and she scored above average! For a fun experiment they want us to teach her some simple signs. As of right now she just thinks its really funny but won't do them. Her daddy did teach her the fist bump (in one day!) so maybe the signing will be his job.
Thursday ~ We had our first pulmonary appointment. This wasn't supposed to be until later in the month. We were really happy that they were able to see us sooner. Recently she has been choking a lot during and not during feeding, she also has episodes at night where she does her in pain cry randomly the developmental nurse and us think its possibly reflux, her soft pallet causing an obstruction or apnea. The pulmonologist right now wants to figure out why her chest is that shape. He said one reason could be Juene syndrome or something like that or because of her soft bone issue the diaphragm muscle could be pulling her chest walls in. It sounds bad but her pulse/oxygen levels at rest are ok and her pulse/oxygen levels during feeding go down lower than they should but its not low enough to cause any intervention or major concern at this point. He did order another full body x-ray and upright chest x-ray. I guess vitamin d makes the bones look different so they could have missed something last time and it will give them a better idea if her chest shape has actually become worse. Our geneticist check in on us while we were waiting and it sounds like she might go ahead and order a sleep and swallow study. The pulmonologist seems great but I'm not thrilled about his wait and see attitude. So after that loong afternoon at the dr's we came home to a dead water pump :( ugh so we packed up and slept at my grandparents for the night.
Friday ~ We were supposed to go to the endocrinologist but had to cancel to deal with the pump. Unfortunately we won't see him again until June, we're praying they can give us a cancellation like our pulmonary appointment. I made amber's mass gen. appointment! It wasn't supposed to be until July 2nd (!) but (thanks to her being famous and loved by all the geneticists in our region) we were moved up to March 19th!!!!!! Oh and my mom found a happy apple in with some old toys!!
Well that's our crazy week! I think this sums up how we all feel

yup she feel asleep while I was feeding her
(we finally got her a real highchair! it seems to work really well)
I think this runs in the family

He's such a cutie :)
Have a good weekend its supposed to be nice and warm here yaay!!!